When Multiple Sclerosis Hits: A Guide for Family and Friends

Generally, the first impulse when a person receives a diagnosis of MS (Multiple Sclerosis) is disbelief. No one in my family has that! I don't always feel this way; wouldn't I always feel this way if I actually had MS? What caused it? It can't be MS...it's my age...my weight...overwork...stress...I'm just tired. Denial is pretty common in individuals, particularly those who are at the beginning stages if MS or have a mild relapse/remitting form of MS. It may take some time and a few relapses before they are willing to accept the fact that they have MS. Calm discussions can help get them through this stage.

Handling Fear

When the individual's diagnosis is finally accepted as true, the next thing is fear. Fear of what this will mean in their life, fear of becoming a burden and fear of what their friends and family will think or do when they tell them. Often the individual has no idea how to tell their loved ones that they have this incurable, progressive disease and often fear their family's reaction. Because the patient may not even understand the reality of MS themselves, the worried imagination is generally more severe than the reality. For friends and family facing this, know that your loved one may not know how to tell you gracefully. Things may come out in a rush, be said in a hostile manner, or be told in little snippets over a period of time. Know that they are afraid and your reaction can help them get through that. One of the best ways you can help them through this is to learn about Multiple Sclerosis. Your knowledge will help you to understand what they may be worried about.

Grieving for Loss

Even after the individual has learned more about their MS, accepted the diagnosis and informed their family or friends, there is another stage to go through. When they start understanding the symptoms and progression of the disease that has erupted in their life, they will also grieve. This grief, for what is no longer possible, can be intensely personal. There may be feelings they really don't want to share with those around them. In my case, I can even remember when that grief hit me and how hard it was for me to express those feelings.

I was going through my first serious relapse and for the first time since my diagnosis, I was having a great deal of difficulty walking. Every step took extreme effort and each day it seemed worse. Lifting my right leg, in particular, was like it had a five hundred pound weight attached to my foot. My husband and I had gone to an outdoor Moody Blues concert and this required quite a bit of walking, not only at the concert but also to and from the buses, back and forth to our cars. As I walked across the fields during the concert, it was as if I was moving in slow motion. I had to concentrate so much on just taking a step that I broke out in a sweat and thought I would pass out. All those around me, from teenagers to those in their seventies, seemed to walk by with such ease. My thought was...They're so light. They're so fluid...free. It's as if they're gliding. In that moment, an intense sorrow filled me because I realized I might never know that light and free feeling again. In that moment, I faced that I might end up in a wheelchair and not be able to walk again. I grieved for weeks while I learned how to accept and face my unknown future.

Fortunately after two rounds of steroids, my relapse passed and I once again gained the ability to walk moderate distances. The fear of what could be had passed since we had faced that demon and decided how we would make adjustments. The ease and lightness of my walking never returned though. To this day, I can still catch myself wistfully watching children running up and down stairs or playing in a park and have a mini pity-party for myself. But I found that as you begin to learn more about the disease and even more begin to meet other people with MS, you can also gain a bit of gratitude and learn you're not alone. Know that you will also go through this stage, for just as the one with MS will suffer loss, so will you in realizing what you can and can't do with them anymore.

MS is Unpredictable

Each patient with MS is different and will have their strong points and their weak points. MS is like that. Unpredictable in who it affects and what part of their nervous system it affects, it is never the same from person to person. Someone with MS doesn't know what their day is going to be like until they wake in the morning. In addition, in relapse/remitting MS, there can be times of rapid debilitation or times when things appear very stable.

That unpredictable aspect can make it very difficult for friends and family. Though your loved one with MS may look normal, they may not be able to do something you wish to do with them. They can also become irritated because they'd like to do something themselves and you're helping too much. The symptoms of MS can be so hidden to the outside and yet so debilitating on the inside. Fatigue, depression, problems with balance and weakness can all be part of the symptoms that come and go in a flash. All of those can rekindle the cycle of fear and frustration in your loved one. The best thing you can do is to continue learning about the disease, allow the individual with MS to talk about what they feel. Offer your help but don't get upset or continue to push it when the individual wants to try to do things without assistance.

The Long Haul

There are good days with MS and though a person may not be just like they used to be, there is much they can do and a lot they will want to do. Your calm acceptance of the situation, your willingness to be flexible, and above all, developing a hefty sense of humor, will be a huge asset in your relationship with this MS afflicted loved one. Hang in there for each other and you'll do just fine.

Additional Articles on Multiple Sclerosis

Are You Aware? MS (Multiple Sclerosis) FAQ

Cognitive Issues in MS (Multiple Sclerosis)

10 Gardening Tips to Assist the Mobility Challenged

Imipramine: Side Effects and Effectiveness in Treating Multiple Sclerosis

Baclofen: Side Effects and Effectiveness in Treating Multiple Sclerosis